NIAA Data Handling Policy
The document below outlines data access and governance policy for all datasets coming under the responsibility of the NIAA and HSRC.
Specifically, this includes datasets where the HSRC is the data owner/guardian (e.g. NAPs) and where the HSRC is a data handler (e.g. NELA).
Where the HSRC is data handler, decisions about access will lie with the data owner.
Where the HSRC is the data handler/guardian, then this policy guides that activity.
This document will be reviewed on an annual basis.
NIAA Data Handling Policy April 2014 (180 KB)
Re-identification of Anonymised Data
The analysis of large collections of anonymised data has the potential to answer important questions in relation to health and disease and thereby provide benefits to society. The NHS may be uniquely placed to exploit such opportunities for public good. Balanced against this, the risk of anonymised individual research subjects in the UK being re-identified from genomic, epidemiological and social science data is a threat to the fundamental and human rights of individuals whose data is used for such purposes.
The Expert Advisory Group on Data Access (EAGDA) is a group of experts established by four major UK research funders: Cancer Research UK, the Economic and Social Research Council, the Medical Research Council and the Wellcome Trust. The aim of the group is to provide strategic advice on emerging scientific, ethical and legal issues relating to data access.
The EAGDA has produced a joint response to a statement supporting a set of recommendations to manage the risks posed by re-identification of anonymised data. These responses include possible sanctions, such as withdrawal of funding, for researchers who deliberately attempt to re-identify individuals without their consent.
The HSRC recognises that this is an important and developing policy area and endorses the recommendations in this EAGDA statement, which can be accessed here.